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Three years ago, 28-year-old Emily Morton from Australia was living a happy, ordinary life.
She had recently married the love of her life, Andy, and the couple was enjoying every moment together. They were even planning to start a family soon. Life seemed perfect.
But one day, Morton began experiencing a peculiar, persistent pain in her teeth. At first, she thought it might be something minor, but the discomfort only grew worse.
A visit to the dentist didn’t reveal anything unusual. However, within days, the pain became unbearable, spreading throughout her mouth and across both sides of her face.
“Imagine having a dentist drill into every single one of your teeth 24/7 and there is nothing you can do to stop the pain,” Morton shared with news.com.au.
Despite visiting multiple dentists and doctors, no one could pinpoint the cause of her mysterious condition. Desperate for answers, Morton underwent a series of brain scans and blood tests in an effort to identify what was happening to her.
Eventually, she was diagnosed with atypical trigeminal neuralgia, a debilitating condition often referred to as ‘suicide disease’.
But what exactly is this condition, and why is it so devastating? Here’s what we know.
What is ‘suicide disease’?
According to Arizona Pain, the ‘Suicide disease’ is a condition called Trigeminal neuralgia. It is the term for pain caused by the trigeminal nerve.
The trigeminal nerve begins just behind the ear on either side of the face spreads across the cheeks, jaw, lips, and nose and provides sensation to your head and face.
While typical trigeminal neuralgia affects one side of the face, Morton’s case involves pain on both sides, making it all the more debilitating.
Morton said she began experiencing “electric shocks” through both sides of her face, triggered by anything that touched it.
“It would hurt when I smiled, talked and ate. All normal things. There are no words to describe this degree of pain. It is like being struck by lightning, it makes you want to fall to the ground and scream,” she said.
As per the news.com.au, doctors told Morton that it is the “most painful condition known to medicine”.
The disorder earned the grim nickname of being the “suicide disease” as those who suffer it are in so much pain they often “wish they were dead”.
According to the American Association of Neurological Surgeons, 150,000 people are diagnosed with trigeminal neuralgia every year. While the disorder can occur at any age, it is most common in people over the age of 50.
What causes Trigeminal neuralgia?
According to the Cleveland Clinic, trigeminal neuralgia occurs when the trigeminal nerve is damaged or irritated.
This often happens when a blood vessel—either an artery or a vein—compresses the trigeminal nerve near the brainstem, disrupting its normal function. This compression leads to neuropathic pain.
While blood vessel compression is a common culprit, there are several other potential causes. Conditions like multiple sclerosis, or similar disorders that damage the protective myelin sheath around certain nerves, can also trigger trigeminal neuralgia.
Additionally, a tumour pressing against the trigeminal nerve can result in the condition. Other triggers may include strokes or facial trauma, which can damage the nerve and cause the condition.
However, for Emily Morton, the exact cause of her condition remains a mystery. Despite undergoing numerous tests and treatments, answers continue to elude her.
“We have spent thousands of dollars trying to find a cause and an effective treatment for the pain,” she shared.
“We’ve travelled interstate and even overseas in an effort to get me some kind of quality of life. It feels like a race against time to find out why. The condition has taken everything from me. It takes over my entire existence,” Morton added.
How is Trigeminal neuralgia treated?
Managing the pain associated with trigeminal neuralgia is critical, as the condition is debilitating. According to Arizona Pain, various approaches are available to treat trigeminal neuralgia, offering patients some hope for relief.
Morton is currently undergoing a cutting-edge procedure called MRI-Guided Focused Ultrasound, which has recently become available in Australia.
This innovative technique utilises focused ultrasound waves to target the Thalamus, a specific region of the brain, to disrupt pain signals. The procedure offers Morton a 50/50 chance of experiencing some relief.
However, the treatment is still in its infancy and is not covered by Medicare. The total cost, including the procedure, travel, and rehabilitation, exceeds $40,000.
Thanks to generous donations amounting to $20,000, Morton has been able to move forward with the treatment and remains hopeful for a cure, reported the New York Post.
“In 2024, I believe there must be technology out there, somewhere, that can at least help. My plan is then to dedicate my life to becoming a fierce advocate for people with invisible ‘mystery’ illnesses,” Morton expressed.
She continued, “I want them to know that they are not alone, I want them to hope and trust in the science that is emerging, and I want us to come together and fight for better healthcare.”
With input from agencies